Kidney transplant is the most common organ transplant needed in children. Currently, more than 1,200 children nationwide are on a waiting list for a life-saving kidney transplant. Although not as common as some congenital birth defects or other chronic medical conditions that can develop in children, the need for a life-saving organ transplant is a life-altering diagnosis for both the child and their family — and anyone can help by becoming a donor.
We spoke with two experts from MedStar Georgetown University Hospital, Jennifer Verbesey, director of the Pediatric Kidney Transplant Program, and Katie Wallace, a Certified Child Life Specialist, to learn more.
Why would a child need a kidney transplant?
The need for a kidney transplant is because a child has reached end stage kidney disease or is born with a congenital condition that results in the kidney not functioning correctly, and which can lead to kidney failure.
What are the symptoms that a kidney transplant is needed?
The need for a kidney transplant can be diagnosed in utero or after the baby is born. In utero, an ultrasound can see the child’s development and if their kidneys are processing fluids correctly. For diagnosis after a baby is born, there are not always symptoms, but one indicator can be high blood pressure. The need for kidney transplant is often diagnosed when children come to the emergency department not feeling well and their lab work indicates the improper functioning of the kidney. It could also be diagnosed through lab work done at regular checkups.
How is the need for kidney transplant diagnosed?
The need for a kidney transplant is determined by monitoring the glomerular filtration rate (GFR), which measures how well the kidneys filter waste. If GFR is lower than 15, dialysis and transplant are considered. Ideally, we do not want to do transplant until absolutely necessary, as transplants only last about 20 years. We usually try to wait until puberty to do the transplant. The best way to ensure a kidney will be available when they need it is for someone who would like to donate their kidney to the child participates in the National Kidney Registry living donor program, whereby they pay it forward by donating a kidney to someone else in need when the child is young, thereby ensuring the child will get the kidney they need when they need it. Learn more at kidneyregistry.com
Where do the organs come from for pediatric kidney transplant?
Living donors are the best source for kidney transplant because the kidneys from living donors work faster and last longer. Since donors have to be at least 18 years old, children get adult kidneys for transplant. The best opportunity for a child to get a kidney from a living donor comes from a family member or friend joining the donor registry to become a non-directed donor (learn more at kidneyregistry.com). If a child has to wait for a deceased donor, the wait can be long and the kidney can take longer to work.
What are both the short-term care and long-term care for a child that has a kidney transplant?
The most important thing for a child who has a kidney transplant is to take their immunosuppressant medicine. This keeps the body from fighting the new kidney.
Good compliance and regular clinic visits are key to transplant success; otherwise, the child can get sick or lose the organ.
What are the short-term and long-term prognoses for a child that has a kidney transplant?
At MedStar Georgetown, we have a 100% success rate with pediatric kidney transplants, especially when the kidney comes from a living donor. If children do have kidney failure, they will have slow growth and failure to thrive. It is important for them to get a living donor transplant so that they do not have to go on dialysis, which can significantly impact their life.
What parents need to know:
- Their child and family are not going through this alone.
- While caring for a kidney transplant is a lifelong chronic condition, don’t be scared — there is so much expertise and support for the child and the family as care of an organ transplant is a lifelong commitment and the child will always need care from a transplant center. This is a marathon, not a sprint.
- Get to know the transplant team early — before dialysis or transplant are necessary.
- Bring living donors into the process early so that when time comes for transplant, all are ready to go in order to avoid dialysis. Any donor is a good donor through the National Kidney Registry.
- Appeal to friends and family to donate, as non-directed donors can jump start a chain reaction of donation where kids benefit the most.
- There is help for siblings — we take a holistic approach to support coping and understanding.
- Participate in support groups.
What type of support is needed by children who need a kidney transplant?
There are many different types of support for the child and family, including medical expertise, psychosocial support, social workers, Ronald McDonald House allowing them to stay closer to the hospital, Certified Child Life Specialists (CCLS), housing assistance, help with transportation and family meetings.
How are CCLS involved pre, post, short-term and long-term after pediatric kidney transplant?
Before transplant, many children and their families have been somewhere else and are coming to a transplant center for the first time. We know they come with medical trauma, so we meet kids where they are. They are often hospitalized, so we help them adjust and cope with hospital experience; provide a continuity of care during the process; prepare them for what things will look like post transplant; prepare them when they come in for transplant; psychosocial support; and use medical play to help them understand the process.
After the transplant, they are in hospital for weeks, maybe longer. We support them through this adjustment; get them ready for discharge; provide a green cape and signs to celebrate their transplant and continue to mark any and all accomplishments.
There are many appointments the first year, so we provide age-appropriate transplant education at every stage. We stress the importance of medication adherence and host support groups for teens and young adults. At MedStar Georgetown University Hospital, we see patients until adulthood, establishing strong relationships and consistent care.
Lisa Clough, MS Ed., CHES is a health journalist and Certified Health Education Specialist.
Meet the Experts
Jennifer Verbesey, M.D., Director, Pediatric Kidney Transplant Program, MedStar Georgetown University Hospital, is board certified in general surgery and specializes in kidney transplantation for adults and children, and live donor nephrectomies. Transplant surgery combines what Dr. Verbesey considers to be the best parts of medicine, science and technology — the need for complex decision making and the opportunity to help others while building lasting relationships.
Katie Wallace, Certified Child Life Specialist, Child Life Coordinator, MedStar Georgetown University Hospital, helps reduce the stress and anxiety that many children experience in hospital and healthcare settings. Wallace is specially trained to help children and their families understand and manage challenging life events and stressful healthcare experiences. She and her team are skilled in providing developmental, educational and therapeutic interventions for children and their families under stress.
